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Mentally disabled get help with long-range planning
Saturday, February 13, 1999 By Diana Block, Post-Gazette Staff Writer
Matt Burda, 33, leads a fairly normal life. As a teen-ager, he hopped on the bus every morning to Titan Middle School in Etna. He swam away his summers at the local pool. A Shaler High School graduate, he now works full time at the Kane Regional Center in Ross and lives at home.
The details seem ordinary, but every one marks a milestone for Matt, his mother, Marlene Burda, and the mentally retarded.
"Everything he has, we had to fight for," Marlene Burda said, counting off three lawsuits and countless confrontations with everyone from the Department of Welfare to the manager of the nearby pool.
Until recently, their last battle seemed impossible to win. Marlene and Steve Burda feared what would happen when they were no longer there to watch over their son. His brothers could informally take responsibility for Matt, but the only legal arrangement they could afford was to leave his care to an institution, which Marlene Burda had fought since day one.
Matt's role as a forerunner continued this month, when his parents began planning for his future with the help of a new program called Family Trust from ARC Allegheny, an organization that helps mentally retarded and developmentally disabled people.
Believed to be the first of its kind, Family Trust has three main components: experts to help families arrange, implement and supervise care plans; individual bank accounts to fund the plans; and a system for families to record everything a future caregiver will need to know, from medical history to preferred foods to whether a client likes to fall asleep with the lights on.
Some of this support has been available before. Banks will provide managed trust funds, though the minimum deposit is often as high as $500,000. But the Family Trust will walk families, whatever their resources, through the whole planning process, providing any information or services the clients need or want.
"It is the first comprehensive program for planning for a person with disabilities in the country," said Marsha Blanco, chief executive officer of ARC Allegheny.
The Family Trust comes as a relief to parents like Marlene Burda.
The program helped the Burdas choose a plan that will provide for their whole family. They will leave their home to Matt's brothers, who will sell it to a care agency chosen by Matt's advocate. The brothers will receive some money as their inheritance, and Matt will stay in familiar surroundings as his family home becomes a small group home.
"He doesn't even have to move from his room. Not a sock," Marlene Burda said.
The Family Trust was made possible by Medicare and Medicaid changes six years ago. ARC Allegheny has worked with myriad laws and agencies since then to develop the program, Blanco said.
"It's an unbelievable comfort to a parent who's asked ever since their child with disabilities was born, 'What will happen when I am no longer here?'"
The trust can also help disabled people whose caregivers are alive and well. Under current regulations, people whose care is funded by Medicaid cannot have more than $2,000 of personal assets.
That was a problem for Jeffrey Ray, who is the beneficiary of a trust fund set up after his family won a large settlement from the hospital where he was born in 1980 with severe disabilities due to oxygen deprivation.
The settlement money went into a fund that was planned to cover Ray's nonessential expenses, but the amount - almost a million dollars by the time he was eligible for it last December - would have disqualified him for Medicaid.
If he had to use his fund for residential care he would deplete it after about three years of 24-hour-a-day care, according to his mother, Cynthia Young. Then he would face up to six months of waiting for Medicaid benefits.
"That just didn't hit me right, because the money was given to him for his care throughout his life," she said.
Instead, the money became assets of the Family Trust, where his mother can still spend it on extra therapy and recreation that Medicaid won't cover. Young said she planned to buy a handicapped-accessible home and van for her son, who now lives in a group home, and one other disabled person. She also uses the money to take her son camping, and on an annual trip to Disney World.
The Family Trust will be formally introduced at a press conference today at 10:30 a.m. at ARC Allegheny on the South Side. Other initiatives will be announced, such as identifying and teaching people about model programs nationwide, and a new ARC Lifetime Support Center building.
Former U.S. Attorney General Richard Thornburgh and his wife, Ginny, will be there to announce the public phase of a campaign begun in 1996 to raise $2.5 million.
The Thornburghs have advocated for the developmentally disabled since their son was badly injured in a car accident more than 25 years ago. Ginny Thornburgh is a past president of ARC Allegheny, and has worked extensively with Marlene Burda to reform institutions for the mentally handicapped across the state.
The Family Trust makes Marlene Burda feel as though her earlier battles have paved the way for something better. The woman who fought for her son in Shaler, and has fought to reform institutions as far away as Hawaii, Puerto Rico and Canada, seemed fragile as she spoke about her son's future.
"I felt in my heart this is why I joined the ARC to begin with. And I'm glad the next generation has stepped up to the plate. They're making what we started grow."
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